New to pmr, advice please

[Sueloobyloo]

When I was first diagnosed with pmr, I was put on 15mg pred, I felt better so I tried to taper down to 10mg ….big mistake! The pmr came back with a vengeance and my doctor put me on 20mg pred. After 3 weeks, I am still suffering even worse, it feels like I’m having the inside of my body stretched and punched and also a lot of cramp. Someone suggested that I might have Fibromyalgia, so I am seeing the doctor this Thursday and see what she thinks. What I want to know is, what is the highest mg you can have on pred? I am not sleeping very much at all and I feel so fatigued and pain killers don’t seem to help, I was wondering if you lovely people could give me any advice please…. Thank You 😊

[mrpullings]

I'm trying to remember back to when I was first diagnosed and I think I started at 25mg - not sure what the max the doctor can/will prescribe? I can only say it took approx. 5-6 years to fully come off the prednisone. It seemed every time I tried to step down, my symptoms would come roaring back. The road was long and tedious, but I eventually came off. My primary doc said that he had patients that had to stay on 1mg for the rest of their lives (such a small dose, but I guess it was enough!)

[Doodles2013]

Hi. I have been the same. I started on 15 for 3 weeks then tapered and have been on 12.5 for 2 weeks. I seem to feel worse now than I did before I was diagnosed. I will see what this week brings and then contact to doctor if its no better. Good luck

[Seacat30]

Experts will be along in a bit but PMR makes you tired, particularly if you are trying to live a 'normal' life, and prednisole often stops you sleeping.

You could try taking magnesium supplements for the cramp but be careful as they can upset your stomach.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear you’re stilling having issues, you did mention neck cramps in one of your previous posts….did you follow that up with the GP?

This time you mention stomach issues and cramps again, so do you mean stomach cramps or the initial neck ones, or both?

Lack of sleep may be due to Pred, and fatigue is part and parcel of an autoimmune illness I’m afraid (although the recent hot weather won’t have helped) …and if symptoms are due to your PMR then highly unlikely that painkillers will help.

Just make sure you jot down all your issues so you can discuss with GP….and if all down to your PMR then you can go higher if needed… usual starting dose is anywhere between 12.5-25mg - although some do need to go as high as 30mg. BUT, your GP does need to be sure it’s all down to PMR….

Please let us know how you get on at appointment.

[Sueloobyloo in reply to DorsetLady]

Thanks DorsetLady, I have them many ailments, it’s hard to fathom out what’s what, I get cramp at the back of my legs, top and bottom, it just happens out of nowhere, my stomach, ribs, hips and my back, numerous places, I feel like there’s little workmen, pulling, stretching and prodding all at different times, I even get jaw ache while eating, it’s so annoying, I’ve never had anything like it before and the spasm in the side of my neck and pain radiating to my head is still happening, so I have written down what I need to tell the doctor, because I do forget and see what she says on Thursday. So sorry for the long text 😌

[DorsetLady PMRGCAuk volunteer in reply to Sueloobyloo]

Don’t ever apologise for long reply (there have been a lot longer I can assure you!) ..and need to impress upon GP the jaw ache when eating -along with the neck spasms and head pains - COULD be GCA-which does need to be addressed seriously .

Cramps might be relived by magnesium supplements -although can have undesirable affects on stomach -so maybe think about.. are you sure you aren’t dehydrated?

[SheffieldJane]

They could try 25 mgs as a start dose. Give your body time to settle. I didn’t taper until 6 weeks later. Your symptoms sound distressing. Make sure Fibromyalgia is carefully diagnosed. Some doctors seem to use it as an “ I don’t know” diagnosis. There is a pattern of pain areas for instance.I find the Magnesium supplement I get from Holland and Barrett very effective for cramp and it aids sleep.

I would have definitely expected to experience some relief after 3 weeks. I hope they leave no stone unturned in finding the correct diagnosis for you. I have had practically every type of scan there is for instance. Let us know how you get on. You are going to have to become a very well informed patient. Start with FAQs on here. Good wishes for this to be sorted out soon Sueloobyloo.

[Sueloobyloo in reply to SheffieldJane]

Thank you Sheffield Jane, I will let you know what happens with the doctor on Thursday….kind regards my lovely 😊

[PMRpro Ambassador]

Are you doing YOUR part? It isn't just a question of taking the pills and being back to normal - if you continue with trying to do everything you would normally and at normal levels you will suffer. You need to adjust your physical expectations for a time.

Did you have raised inflammatory markers pre-diagnosis? That is ESR and CRP for most people. How was the diagnosis arrived at? Fibro will not raise the markers nor respond to pred.

What other medication did the GP hand out as "essential" because you are on pred?

15mg is the bottom of the range for PMR. The lowest effective dose in the range 12.5-25mg is in the recommendations, with 30mg for exceptional cases, However, your doctor has probably clouded the view rather - trying to reduce from 15 to 10mg may be usual in other conditions - it rarely works in PMR. and once a flare has been caused it is often much harder to get things under control again.

[Sueloobyloo in reply to PMRpro]

Hi there, I have only had pred off the doctor and nothing else, but I am on other medications for my health, but I have just looked on my medical records (it doesn’t tell you everything) my serum creative protein level in April this year was 28 mg and then in July, it went down to 18 mg but my symptoms feel worse this time, so I can’t understand it. The esr, I can’t seem to find it, but I will mention it to the doctor on Thursday and see what she says. I know last time I saw her, she said that if I don’t feel any better that she’ll refer me to a rheumatologist, so hopefully I will get some answers. I am so happy that I found you and all the other lovely people online as it really helps me. Kind regards, Sue 😊

[Predniso141]

I had a recent flair of PMR and think it was caused by Eliquis for my afib issue. . I started 40 mg of prednisone for theee days, then tapered to 20 mg for 3 Days and will now taper to 10 for 3 days then will stay on 1.5 for awhile. This is my second bout of PMR in 6 years and I hope this Prednisone does the trick. I think the big dose at first was what I needed. Last time I was on 5 mg for Two years. Hope this is different this time. Good luck to you

[Sueloobyloo in reply to Predniso141]

I will certainly ask my doctor about this, thank you my lovely 😊

[Sharitone]

Hi Sueloobyloo, sorry you are suffering so much a the moment. I was started on 15mg, then put up to 20mg, then 25 mg in fairly quick succession, so if it's appropriate, there's definitely room for your GP to manoeuvre with the pred dose, while you are waiting for the rheumy appointment.I will put in my usual unpopular vote for sleeping tablets, because how can you expect to get better if you only get a couple of hours sleep a night? My GP want me to take them, and 'I am so grateful - 6 hours a night make s things so much more bearable. I have been able to reduce the amount of sleeping tablets with the dose of pred, so there doesn't seem to be a significant issue with dependency.

If you don't fancy sleeping tablets, you can try taking your second dose of calcium (assuming you've been prescribed them)}late at night. It was a tip I found here, and it does help a bit.

[Sueloobyloo in reply to Sharitone]

Hi Sharitone, something else that I can discuss with my doctor, thank you for the heads up my lovely 😊

[Dochaz]

I have to agree with Sharitone. I was prescribed Zoplicone (commercial name in France is Imovane) after asking my internist about lack of sleep on Pred. I was getting 2-4 hours a night.

I take half a pill, 3.25 gr, about 2 or 3 times a week when I've had a few bad nights just to catch up on lost sleep. I feel much better the following day. I do tend to end my night's sleep at 5 am despite the Zoplicone, and still wake up a couple of times during the night, but after 4 months of bad sleep deprivation originally I do think it helps. Not all medication is terrible! If it helps you to get through a difficult patch, why not.

[Sharitone in reply to Dochaz]

Yes, three cheers for Zopiclone!

[Doodles2013]

As I said previously I felt worse after I started tapering than I did prior to diagnosis. However, I am feeling much better, in every way, than I have done for a good few years. The difference? I have changed my diet. Very few carbs, a few treats at weekends but nothing during the week. Eating way more veg. Cutting down on red meat. More fish and chicken. It really has made a difference and I have lost weight too which has helped with me feeling good. I have cut out coffee and replaced with green tea (turmeric in it). I have come off the PMR group on Facebook as I found it didn't help my mental state of mind, I know sometimes it helps to know others are suffering the same as you but I found it too negative, worrying and depressing. I feel a lot of physical symptoms are controlled by your mental state of mind too so i gave kept active and have been doing different things at weekends. I hope you feel better soon but thought I'd share my story.